Maintaining friendships when you have lupus

Lupus Foundation of America

Resource Content

Fabulupus is the latest book to receive the Lupus Foundation of America seal of approval. Written by Jessica Kundapur and Jodie Nimigon-Young, the book is a guide to living well and managing the disease as a young adult with lupus. 

In this excerpt, Jodie and Jessica offer advice on how to overcome the obstacles lupus can create in maintaining or developing friendships at any age.

Dealing with friends, bringing them on board with your health issues and their associated limitations, can be similar to what you experienced with your family. Just as you have to decide to take responsibility for your health with your family, and which parts you need to ask for help with, you need to be able to acknowledge and explain these same issues with your friends. Of course, sometimes it can be trickier to discuss your health, and its impact on your life, with your friends than with your family. 

Friends can find it more difficult understand, because you are supposed to be just like them – happy and healthy! They will be confused about what you are trying to explain to them, about you being sick and being diagnosed with a chronic health condition. Aren’t chronic health conditions for older people who haven’t taken care of themselves throughout the years? Even more confusing is trying to explain a little-known condition like lupus, as opposed to letting your friends know you have a well-known condition like diabetes (although there are lots of misconceptions about this too!).

So, how do you decide to tell your friends about your situation? How much do you decide to share? How do you decide which friends to tell and which friends to keep your condition a secret from? These are all very personal questions, and will take a lot of pondering on your part, and possibly a discussion with someone you trust (family, close friend, doctor, social worker, etc.). 

Your considerations might include: How well do you know your friends? How have they treated you or others when difficult situations have come up? How do they treat your opinions on everyday things? Are they pushing for you to take their perspective? 

How many details you share is another personal decision. As with family, what seems to work best with friends is a balance between sharing enough details to explain your situation, while not going overboard with too many personal details.

Your friends might not understand immediately, and will push you at different stages of your relationship (and life events), but should respect your limits. Just like family, your friends might not always believe you when you say you are having a good day or a bad day, because you will likely “look” the same every day. However, your friends will quite likely be less forgiving than your family when you need to cancel at the last minute because you are suddenly not feeling well. The rest of your friends may not be feeling well either, but know that they can sleep in tomorrow and recuperate, and may not understand that you cannot recuperate in a day or two like them. 

From Jodie’s personal experience, friends will push you a lot more than family, and interestingly, this can feel like a trap. It’s a lot easier to allow your family to take care of you (and to play the sick role) and to accept being pushed by your friends (and pretending everything is fine). This imbalance can lead to a dangerous spiral of pushing too much and not pushing enough between the two parts of your life, which will likely cause you to end up sick, so it is important to address the challenge of finding the right balance in all parts of your life. Another challenge is that not only are you adjusting to the new life, but so are your friends (and family). How you interact while you are all adjusting to this new life can quickly become a pattern, and can either be helpful or harmful. Once the pattern is set, it is even harder to break, so tread carefully!

"It is always better to be surrounded by a few really supportive individuals than a ton of people who couldn’t care less about your health and happiness."

The positive side of interacting with your friends is that you will definitely find out who your true friends are. Of course, when you are in the thick of things and are really sick, losing friends is a difficult thing to accept; when you find out that you will be sick for the rest of your life, all you want is to be normal and to be surrounded by supportive friends. Just like with family members, support is only helpful if it provides you with what you need at the time. Friends are only good if they are there for you throughout both good times and bad, and provide you with what you need at different times of your life. Although it is challenging to accept that you may have outgrown a friendship, it is always better to be surrounded by a few really supportive individuals than a ton of people who couldn’t care less about your health and happiness!

The process of losing friends is normal, and everyone goes through it, lupus or not. We will all have different friends throughout our lives, and most of our friends are usually lost or gained during major life changes.

These changes typically include starting part-time work while in high school, going to college/university, starting a career and starting a family. However, for those of us diagnosed with an illness while in adolescence or young adulthood, the most important life change that can affect our relationships can be our diagnosis.

Friendships can also change in a more positive manner. Your diagnosis can give you an opportunity to explore new activities with your friends, activities that fit better with your new limits. 

"Your diagnosis can give you an opportunity to explore new activities with your friends, activities that fit better with your new limits."

This can take some imagination at first, especially if you are in the habit of doing certain things with certain friends, but these changes can actually make your friendships stronger. They will get stronger not only because you are doing new things, and building new memories together, but because you are testing your friends’ willingness to be flexible and to adjust to your new limits.

More news from the bright side is that you will likely encounter new friends along your journey, either through your hospital or through local support groups, if you feel inclined to expand your horizons and to get involved and give back (that’s how Jodie & Jessica met!). 

Although many individuals find support groups helpful, if it’s not your cup of tea and you’re uncomfortable with the idea of sharing and comparing your story with others in a similar situation (getting tips on how to handle different situations and learning better health management ideas), then it’s okay not to participate, but always keep the idea in the back of your mind. 

One day, you might want to connect with someone who is on the same life journey (and facing the same challenges) as yourself. In the meantime, don’t give up on your quest for true friendship! Remind yourself of the positive aspects of your true friends as often as necessary! Remind yourself of the positive aspects of no longer having certain so-called “friends” who may have actually had a negative impact on your health and happiness.